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  • robhall74

    SO, I live in Northern Illinois and am no writer. In fact, My grammar, spelling and punctuation all suck. That being said. I hope you find what I have to say useful. Or at least read what I say and have a solution. But people. I am not giving up cheeseburgers, pizza or taco’s. So don’t even try! :)

    To the point, I suffer from MS (Multiple Sclerosis). Right now I am a quandary to my Dr’s. My meds don’t work. I am basically a shut in. I am so dizzy I can’t drive. So exhausted I can’t do anything, and in soooooo much pain I cry often.(After 12 or so major surgeries broken bones and head injuries. That is saying a lot) I don’t say this for sympathy. I say this as an intro. I am looking for a way to vent, listen and find other people in the same boat. Scratch that. I am looking for people that were in the same boat and found a way out.

    I started reading about people when I was diagnosed after 10 years of misdiagnosis and laughed. They just wrote about they can’t do anything. BooHoo. Blah blah blah. But then I realized, my life was headed there. After 10 years of damage, “A” typical symptoms and increasing symptoms, my life went there too. Wow, I turned in to one of “those people” What happened? Pain, that is what happened. Anyone that has been there or is there. I mean no offense.

    Anyway, I hope to write more and listen to what anyone has to say. I will try anything once. Except for not eating the above mentioned foods

  • beaurylancambria
    First, MS does stink! I have never had a surgery or a broken bone, but I do have MS. For me, having a positive attitude and low stress has done wonders. Before you ask, I dont ride a unicorn! I choose to be happy. If I gave myself the opportunity I could have a nervous breakdown on any given day. I have seen the results and know that its worth it! Second, my diet resembles that of a picky toddler. I have not found that any food or drinks ( I drink a LOT of mountain dew ) affect my symptoms. Third, I am very active. Right after I was diagnosed, I started with a personal trainer. Nothing hard, twice a week for 30 minutes. It was very comical to watch at first. I lost my balance often, but learned to laugh through it. Two years later, I can walk for days. I dont notice my symptoms when I am moving or being active. Sitting or laying down cause me the most problems. I hope you find something that works for you.
  • maria1
    Hi Rob,  First I must say, I am not prescribing by informing you what I am taking and what makes me feel better, do not believe anything i say, find the truth for yourself. I take vit D 5000 uts daily as well as vit E 400 uts Vit C 500 mg along with B complex 2 days a week as prescribed by doctors. Then on my own I take Omega 3 caps and probiotics.  
    Last week with the neuro we stopped the betaseron I have been on since 1993, he said it will be three months for the stuff to leave my body. I am on 5 mg baclofen twice a day and 400mg gamabentin twice a day. The newest script is for pain carbamazepine right now i am on 100 mg twice a day with food because on of the side effects is a dangereous rash, if i dont get a rash i move up to 200 mg twice a day. The drug is used for seizures and NERVE PAIN  which is why it was prescribed for me. It has only been a week. In the first two days I had drilling pain in every place along with severe spasms which for the first time in more than two years I was able to relax the muscles every time they went into spasm. But so far, I am waiting to see what will happen when i get to full dose for a bit.
    Keeping my muscles soft is my daily goal and is always on my mind first before anything else. That is what I look at when i wake and during the day, my canary to feeling well. Deep breathing exercises work for me too.
    In the treating ms topic I posted all my notes from the Take Charge of My Ms Project which has given me much insight into a better living strategy.
    I went through times of rigid diets and changed my habits and found benefit from them all. Now at almost 70 I eat whatever I want, in moderation. Recently i have begun drinking coffee which i had not for years and years, probably more than twenty. I also enjoy sugar, ie desserts whereas i avoided sugar and the sugar blues(do you know the sugar blues, the effects of the withdrawl of sugar from the system). The coffee and sugar along with modafinil, all help with the ms fatigue and side effects of the other drugs. I also take a small dose of an antidepressant to take the edge off living with an old man who is having memory problems that are getting worse. Eating whatever i want is my last pleasure and hopefully getting off the betaseron will show that it helps me retain pounds. haha.  Making fun of everything i can is my favorite past time, laughing at everything too, except ignorance, that makes me sad. Doing my best all the time is important, the little i do do. do do, haha. And also as beaury says, choosing to be happy, weighing and balancing the scale to find all the better to balance the worse. And working hard at giggle giggle giggle
  • dragongreg
    I was diagnosed last week after over 10 years of lousy Dr's and mis-diagnosis.  This includes the famed Oakland & Botsford Hospitals in Michigan, the Cleveland Clinic Ohio and even one of the Mayo Clinic's for over 13 months.  Finaly after dozens of scans and 4 lumbar punctures and new cutting edge common sense Neurologist in NE Florida is all over it.  I dont know what's instore for either of us, but I wish you well and hope that knowing that gives you strength!
  • dylancarroll
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  • dylancarroll
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